Monday, 21 March 2016

YORKSHIRE FAMILY CALLS FOR AUTISM STUDY

Taken from Big Issue North magazine of 21-27 March, please buy a copy when you see a seller. Sensory therapy said to be highly effective

NHS insists current guidelines are best

Could a combination of home adaptations and therapy at a young age help reduce the numbers of people with autism who need to be housed in institutions as they grow older? That’s the question a Leeds disabled organisation and a severely autistic teenager’s parents want investigated by the NHS.

The Access Committee for Leeds (ACL) is an unfunded body run by volunteer advocates that campaigns on behalf of disabled adults, carers and older people, and helps them apply for local authority disabled facilities grants (DFG) to allow for housing adaptations.

One of the families ACL has assisted is the Shepherds in Tingley, Wakefield. Paula and Lee’s oldest daughter Katlyn, aged 15, is severely autistic, creating difficulties in processing sensory information such as textures, sounds, smells, tastes, movement and brightness. Ordinary situations can overwhelm the teenager and make family life difficult.

“My daughter gets very frustrated, has a very high pain threshold, can self harm and be very destructive,” said Paula. “At one stage we had to move all the furniture out of her room. As she grew into a strong young woman we feared we wouldn’t be able to handle her physically, especially as the biggest issue we face is getting her into the bathroom. Obviously all this can frighten her younger sister.”

Coming home

A £40,000 DFG award allowed the Shepherds to install a new, highly colourful bedroom,
an indestructible wet room with a steel toilet and a spare bedroom where Katlyn can obtain specialist support from an integrated therapist.

According to Lee, a builder: “The new facilities have made it possible for us to reduce from six to five nights the amount of time Katlyn is away from home at a specialist residential school in Boston Spa. Her teachers tell us how much she looks forward to coming home, she seems to enjoy her bedroom and her sister is glad to have her around. We are all very pleased.”

Tim McSharry, an ACL volunteer, said: “Over the years by working closely with local councillors and child and adolescent mental health services we have successfully assisted families in similar situations.

“We have found there is an instant improvement for parents being able to cope with their child.

“But it seems that in years three and four after the adaptations – and just as adulthood approaches – the benefits diminish. Where it proves impossible to cope then it means the autistic young person leaves home permanently.”

ACL believes it is better to postpone for as long as possible the moment when those with autism need to be housed in an institution. “It makes sense to try and keep an autistic young person surrounded for as long as possible by the people who love them.

“Additionally, there is also a strong financial benefit to society as the residential costs start from £3,500 and rise to £10,000 a week,” said McSharry.

ACL wants to persuade the NHS to fund sensory integration therapy for children with autism. This
is practised by occupational therapists, who use play activities to try to alter the reaction of the brain to touch, sound, sight and movement.

But its attempts to secure this therapy for families, including the Shepherds, have not been successful.

“We are disappointed,” said Paula. “Teachers at the school Katlyn attends have told us that they have children there who are receiving home- based integrated therapy.

It seems that the behaviour and general wellbeing of those getting extra help has improved immeasurably. We’d like Katlyn to receive some additional support.”

Around 1 per cent of people in the UK have autism. Last week the charity Autistica warned that people with autism die on average 16 years earlier than those without, calling it “an enormous hidden crisis”.

Better use of information

According to ACL a new study led by occupational therapists at Philadelphia’s Jefferson School of Health Professions has backed their belief that sensory integration therapy improves the daily functions of people with autism. Thirty- two children aged four to eight with autism were divided into two groups over a 10-week period. One group received three hours per week of sensory integration therapy.

Assessors, who did not know who was in which group, met with parents beforehand to set improvements goals, such as a child who hates touching food being able to move towards comfortably eating a meal.

The researchers said children who received sensory integration therapy scored significantly higher in reaching those goals. Lead researcher Roseann Schaaf claimed: “By changing how sensations are processed by the brain, we help children with autism make better use of the information they receive and help them better participate in everyday tasks.”

McSharry said: “This study is very interesting and we would like – and have tried to get – the NHS locally to fund a pilot study along similar lines here by paying for integrated therapy for people such as Katlyn.

“If we can help autistic children better participate now in everyday tasks this should pave the way for them to stay out of institutions for a longer time when they become adults.

“We would know if this was the case if the NHS continued to observe those young
people who have received therapy as they move through adulthood.”

However, local NHS bodies have dismissed the idea of going ahead with their own study.

Specialist clinicians

Jane Mischenko, lead commissioner, children and maternity services at Leeds South and East Clinical Commissioning Group – which buys healthcare services in the area – said: “We have taken advice from specialist clinicians and are reassured that the care and support provided for children with autism and their families is within the latest guidance. If the guidance changes we would review the services we commission.”

She denied the CCG was reluctant to be involved in a new study due to its cost.

A spokesperson for Leeds Community Healthcare NHS Trust – which provides healthcare for children with autism, said: “We are always open to new ideas... but the trust is confident that it offers the best current clinical practice.

“By providing goal-orientated support to young people and their families, linked specifically to the needs of the individuals concerned, the trust is ensuring that children with autism in Leeds will be able to participate in daily life.”